Speakers at the event, which was sponsored by the Cigna Foundation, the American Heart Association, the American Hospital Association, and the AARP on Wednesday. also stressed that the healthcare system needs to shift to value-based payment models, if care for patients with advanced (i.e., serious and incurable) illness is to improve.

To that end, C-TAC launched a campaign to help those with advanced illness and their families access person-centered care by promoting policy changes, expanding support for caregivers and families, and engaging with state and community partners.

In addition, C-TAC and the Cigna Foundation commissioned Maven Magnet, a research group with offices in New York, to complete a "digital ethnography" of caregivers needs and challenges as well as identify where these individuals seek support and advice.

Researchers examined 6,700 conversations from family caregiver websites, blogs, social networks, and news sites over a two-year period.

"What was surprising was the emotional conflict and overarching despair and depression and grief that caregivers felt," said Christina Stasiuk, DO, the national medical director for the Cigna Foundation, who spent 14 years in solo practice as an internist before assuming her current role.

Looking at the language of the comments gave researchers insights into caregivers' state of mind.

The study noted that "digital forums are [caregivers'] window to the world where they vent out, share their experiences and seek caregiving advice." Some examples:

"I spend a lot of [of] time crying and just wishing this would just end and then feeling guilty, because I think that."

"Caregiving 24/7 has really taken a toll on me. I will probably have a heart attack or stroke and go before he does."

"I tried to convince him to go back to the hospital so I could get some respite. He absolutely refuses. Now I am exhausted and I feel guilty."

Notably about half of caregivers are unable to work and most report damage to their financial well-being, a summary of the study reported. On top of having to reduce work hours, many caregivers are also responsible for co-pays, Stasiuk told MedPage Today.

They are also isolated and frustrated by their own lack of knowledge about their loved one's condition and about how to provide care, Stasiuk said. For example, they don't know how to lift someone out of a bed without injuring themselves, she added.

Caregivers need "credible resources" whether online, at work, in their community, or in their own homes, she continued.

But education and lack of community support aren't the only challenges.

"Payment is the number one barrier to provide services to people with advanced illness," said Nancy Brown, CEO of the American Heart Association and a board member for the Coalition to Transform Advanced Care (C-TAC).

The first priority of C-TAC's campaign is to gain approval for an advanced care demonstration project, Brown said.

The goal of the Advanced Care Model is to improve quality of care, patient experience, and costs for patients with advanced illness by removing the silos between clinicians and social workers and between "curative" and palliative care professionals, noted C-TAC's application, which was submitted to the Department of Health and Human Services in February.

If the ACM qualifies as an advanced alternative payment model (APM) -- one of two payment pathways established by CMS through its new provider payment framework known as the Quality Payment Program -- physicians and other participating providers will receive a 5% lump sum incentive payments from 2019 to 2024.

The core features of the ACM include:

Per member, per month (PMPM) payment for up to 12 months that covers care management and ambulatory palliative care, as well as evaluation and management visits

Population- and value-based payment using a two-sided risk design, which is adjusted for providers' ability to meet quality performance standards

Integrating and coordinating care with available value-based payment

As the application noted, "the proposed shared-risk model will encompass total cost of care in the last year of life (including PMPM fees) and include a 75%-85% shared savings and shared loss rate, 30% total savings limit, 10% total loss limit, and 4% total risk and minimum loss rate."

Accessibility Statement

At MedPage Today, we are committed to ensuring that individuals with disabilities can access all of the content offered by MedPage Today through our website and other properties. If you are having trouble accessing www.medpagetoday.com, MedPageToday's mobile apps, please email legal@ziffdavis.com for assistance. Please put "ADA Inquiry" in the subject line of your email.